How many people need palliative care? A study developing and comparing methods for population-based estimates

Abstract

Background: Understanding the need for palliative care is essential in planning services.

Aim: To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use.

Design: (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%-60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems-10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%-37.07%) to 96.61% (95% confidence interval = 96.58%-96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care.

Setting/participants: All deaths in England, January 2006-December 2008, using linked mortality and hospital episode data.

Results: Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%-63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%-69.17%) and 81.87% (95% confidence interval = 81.81%-81.93%).

Conclusions: Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%-82% of those who die need palliative care.

Keywords: Palliative care; delivery of health care; end-of-life care; health services needs and demand; needs assessment; public health; terminal care.